Becky Quick, a co-anchor for CNBC’s Squawk Box, has shared details of her daughter’s rare genetic disease.
Quick wrote an essay on CNBC, published Thursday, explaining that despite having worked for the company for 25 years, most people don’t know much about her family, including her nine-year-old daughter, Kaylie.
“Kaylie is a beautiful, happy, loving girl. Those who know us say she’s a mini-me. But I know she’s better than I’ve ever been. She is full of light and life and love. And she works harder every day than anyone I know,” the essay began.
When her daughter was first born, there were minimal problems as she smiled for the first time within weeks and slept well. However, when she was around seven months old, she “crossed her eyes too often” and could not roll over. Kaylie was taken to therapists and doctors at eight months old, where she was first diagnosed with developmental delays.
As those delays persisted, she was prescribed an EEG to monitor her brain, where seizures were discovered. Before she turned three, a genetic test diagnosed Kaylie with SYNGAP1.
The anchor explained that SYNGAP1 is a disorder where a person does not produce enough of the SynGAP protein needed for proper brain development. As a result, Kaylie experiences seizures, developmental delays and intellectual disabilities. According to the Child Neurology Foundation, there is currently no cure for SYNGAP1.
“And like most other Syngapians, she has autism. Kaylie’s autism is severe,” Quick added.
“She has apraxia, which means that even though she struggles to speak, she has very high receptive language and — I think — understands most of what is going on around her,” the essay continued. “Sometimes people assume that just because Kaylie can’t talk she doesn’t understand what they are saying. Sometimes they talk about Kaylie right in front of her. Sometimes it’s unkind. I’ve heard people call her retarded, spoiled, or undisciplined.”
While receiving the original diagnosis was “devastating,” Quick wrote that she was grateful to understand what her daughter was experiencing and to find a community of people who were dealing with the same issues. Since then, the CNBC co-anchor has had her daughter working with a team of therapists, doctors and teachers, which she wrote “helped tremendously.”
“Kaylie continues to make progress, and we have learned a lot about how to best try and help her. But we have a long, long way to go,” the essay read. “And we are some of the luckiest ones. We have resources to pay for help and access to the best care and therapists. And doctors and companies call me back because of my public position. Most people aren’t so lucky.”
